Robbed of hope, the cancer victims being ignored by profit-hungry drug firms

At the age of just 21, Alex Lewis knew time was running out for him. Three years into a losing battle with bone cancer, he was determined to pack as much as possible into what time he had left.

In between bouts of gruelling treatments there were trips to Australia and New Zealand, an active social life and — one of his favourite pursuits — whizzing around the Oxfordshire countryside in his sports car.

‘Alex loved life,’ says his mother Angela, 52. ‘But his one sadness was that because of his cancer he would never have another long-term relationship or get married.’

Tragic love: Alex and Ali were married days before he died from bone cancer

One night in June last year that all changed. At a party, Alex was reunited with Ali Strain, a student from Birmingham whom he’d met while travelling in Australia. They kissed and, against all the odds, Alex’s dream came true.

‘I admit that his father Andy and I were initially concerned,’ says Angela with a smile. ‘We didn’t want Alex to go through any more emotional stress.

‘But, sure enough, he and Ali had fallen in love and were inseparable. We had never seen Alex happier and, after all he had been through, it was wonderful to witness.

‘On September 15 they became engaged and a wedding was planned for May this year. For a while we even dared to hope that the power of love might provide another miracle and hold back the disease.’

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Sadly that was not to be. By Christmas the cancer had spread to Alex’s spine, and was almost destroying his lungs. The young couple made the agonising decision to bring their wedding forward.

On February 12 this year, with his brother Jamie pushing his wheelchair, Alex, then 22, made it up the aisle of his local church.

Later that afternoon, at a packed reception, Alex and Ali celebrated with music and dancing. But Alex, his body ravaged by the effects of a four-year battle with bone cancer, was unable to join his new wife on the dance floor.

‘It wasn’t a sad day,’ says Angela, a housewife from Wallingford, Oxfordshire. ‘It was an incredibly happy, lively wedding like any other.’

Just five days later, with his new wife and his family around him, Alex passed away at home.

'It’s hideous, but patients are dying while potentially life-saving drugs are sitting on the shelf waiting for trials'

But his experience is more than just a tragic love story. It spotlights the shameful truth about treatment and prognosis for people with so-called rare cancers.

These cancers such as bone, brain, fallopian tube, blood and penile cancers, make up between 30 and 50 per cent of all diagnoses of the disease in the UK, according to the charity the Rarer Cancer Foundation.

Yet because the individual diseases only affect small numbers, they are poorly funded and researched, meaning survival rates are still shockingly low.

‘Unlike breast cancer, most people will never know someone with bone cancer,’ explains Rob Pollock, an orthopaedic oncologist based at the Royal National Orthopaedic Hospital in Stanmore, Middlesex.

‘If people are not personally affected by a disease, they are less likely to give or raise funds for it, which impacts on the research budgets and on money we have to spend on looking after patients.

‘In addition, drug companies, usually the main drivers of drug research, will not be interested in a cancer which is less likely to give them return for their money, even if they do manage to find a cure.’

A rare cancer also has very few patients to enter into trials and research projects that allow doctors to introduce new treatments.

‘It’s hideous, but patients are dying while potentially life-saving drugs are sitting on the shelf waiting for trials,’ adds Professor Charles Craddock, consultant haematologist at Birmingham University Hospital. ‘These trials have literally stalled in the pipeline.’

And because many GPs have never seen their disease before, people with rare cancers tend to receive a later diagnosis than other more common cancers — as Alex and his family were to discover.

Zest for life: Alex packed as many adventures as he could into his final years

A keen athlete and footballer, Alex first went to his GP in November 2006 complaining of pain in his upper left arm.

‘We all thought it was a sports injury or possibly growing pains, and the GP agreed,’ says Angela.

‘Alex wasn’t diagnosed until he was referred for physiotherapy in early January 2007, and his abnormal swelling was discovered. Within a week he’d had an MRI scan, followed by a bone biopsy.

‘That night, with Alex still groggy from his anaesthetic, a consultant from the John Radcliffe Children’s Hospital came to see us.

‘She explained that Alex had a four-inch tumour inside his left humorous bone. I am not a crier, and in any case I knew I had to hold everything together for Alex.

‘But then she almost too casually mentioned that they had also found secondary tumours in his lungs. That was when I knew that this was very bad news indeed.’

Alex began three cycles of chemotherapy to shrink the tumour before undergoing surgery to remove the diseased bone and replace it with a titanium prosthetic. This would be followed by five more cycles of chemotherapy.

This was a gruelling regime during which Alex’s hair and eyebrows fell out and his mouth became so full of sores that he had to be fed through a tube in his stomach.

‘At first it seemed as if he had responded well to the treatment,’ Angela recalls. ‘But, in March 2008, within a couple of months of the treatment finishing, scans picked up small lesions in his lungs. The chemotherapy just hadn’t worked.’

She adds: ‘We don’t blame the doctors. We knew that they were doing their very best, but it was still utterly devastating.’

'Just because it is a rare cancer, doesn’t mean that the suffering is any less or that the patients are any less deserving'

What Angela didn’t know was that the treatment Alex had received has not changed in more than 25 years.

‘The chemotherapy treatment regime we have was revolutionary when it was brought in,’ explains Mr Pollock. ‘But it is a one-size-fits-all chemotherapy which today seems quite crude.’

While ground-breaking developments in treatments for more common cancers have led survival rates to dramatically improve, the rate for bone cancer has stayed static.

To put things into perspective, while more women are surviving breast cancer than ever before —more than eight out of ten now survive beyond five years — 50 per cent of leukaemia patients and 35 per cent of bone cancer patients are dead within that same period.

There is some light at the end of the tunnel. Cancer doctors are finding ways to develop treatments for cancers with low numbers of patients. For example, bone cancer specialists are running a large-scale trial into new forms of chemotherapy.

The charity Leukaemia & Lymphoma Research is committing £2.3 million to build a network of 12 clinical trial centres across the UK for blood cancers.

Lost too soon: Alex and Ali could have had a far longer marriage if there was more research into cures for bone cancer

However, for Alex such developments came too late. In September 2008, he decided to take up his place at Portsmouth University to study sports psychology, having deferred the year before.

‘He really settled in well and made some great friends,’ says Angela. ‘But by Christmas he was feeling very unwell and a scan showed that the cancer had returned to his lungs and this time they couldn’t operate because the tumours were too close to his windpipe.

‘None of the doctors had actually said Alex was going to die — they never really do and we hadn’t asked. But I knew then I was going to lose my beautiful boy.

‘Alex was actually very accepting although he never gave up hope. I never once heard him ask, “Why me?”. He did get frightened sometimes. The night-times were the worst, when he couldn’t sleep because of pain or fear.’

He had more chemotherapy and then radiotherapy and, in 2010, photodynamic therapy.

‘We looked into a laser treatment called Cyberknife and tried to get him on a trial. But one after the other the doors were beginning to shut in our faces,’ says Angela.

‘In the end, our main objective was to make his remaining life as happy as possible.

‘A few days after he died we found a note that Alex had written, saying he’d had a perfect life and that he was a lucky man. It took our breath away.

‘We are still very close with Ali. We owe her so much. Their obvious happiness made what was an unbearable time for us all just a tiny bit easier to deal with.

‘Now, in accordance with Alex’s wishes, we want to raise awareness of bone cancer.

‘Just because it is a rare cancer, doesn’t mean that the suffering is any less or that the patients are any less deserving. Alex and his doctors fought so hard, but because of funding they were fighting with one hand tied behind their back. That just can’t be right.’